A cancer diagnosis, the treatment process, and the transition from cancer patient to cancer survivor brings a host of challenging changes with which AYAs need to deal. In the midst of these challenging changes, AYAs are trying to grow up. This combination of changes and transitions makes it critical for parents and guardians to be aware of how important communication is, and how necessary it is to consider the needs of AYAs, as well as what will be most beneficial to AYAs’ development, when communicating.
So, here are 5 things I suggest parents and guardians consider when communicating with AYA cancer patients or survivors:
- Work with your AYA to find a balance between parent oversight and AYA independence.
The transition from healthy to sick AYA brings with it the need for AYAs to become much more dependent on you, rather than increasing their independence, like their healthy peers. To help mediate the challenge of needing to depend on you more, talk with him/her about how he/she wants you to be involved. In general, I found it helpful when my mom or dad would offer to help me, rather than just automatically helping. Giving me a choice to be independent or not was an easy way for me to be independent when I felt well enough to, but then accept help when I was not well enough to do things on my own. Encouraging him/her to do things on his/her own as much as possible is also useful because there is a fine line between really needing the help and accepting help simply because it is offered. As with healthy children, encouraging self help and independence is always preferred, when appropriate, because it offers AYAs a bit of control in an environment in which they are largely out of control.
- Silence doesn’t mean disinterest – give AYAs space to voice their questions, concerns, and thoughts in appointments and visits with doctors.
This is important for younger AYAs in particular. When I was diagnosed at 13, I let my mom do all the talking for me and usually remained relatively silent during most discussions with doctors. This was because I was viewing the doctors as authority figures, not as partners in my care. Had I realized this at the time, I might have been more involved and talked more. Consider talking with your AYA about this issue, and reminding him/her that doctors are partners in care, not authority figures. Let your AYA know it’s ok to ask questions. Provide suggestions for things for your AYA to ask about, or, if there are questions you have, ask your AYA to ask the doctor for you. Find ways like this to get your AYA engaged in his/her healthcare process and decisions. This will help your AYA when he/she needs to go to appointments alone and manage his/her health in the future.
- Adjusting communication to phases of treatment.
Transitions from healthy person to sick patient and then from sick patient to healthy survivor affect an AYA’s identity. At the same time, AYAs are transitioning into adulthood, which in itself is difficult whether or not they are going through cancer treatment. These overlapping changes make it difficult for AYAs to have a stable sense of self-identity. Do they regress to behaving like children because they are suddenly dependent on their parents again? Do they behave like fully-grown adults because they are suddenly thrust into this world full of adults, in which they must confront their mortality? When do they become a “normal” and healthy person again? Is that the day they end treatment or is it months later when they finally start feeling healthy again? Parents and guardians must exercise caution in how they communicate with AYAs throughout these transitions.
- If your AYA does not want to talk with you about their concerns or fears, don’t be offended.
This is likely because he/she is worried about placing a greater burden of anxiety and fear on you than he/she believes you are already carrying. If you suspect that your AYA has unaddressed fears/concerns that they won’t share with you, talk with him/her about approaching the care team to find outside resources like a social worker, therapist, or support group. Letting fears/concerns fester in your AYA will only make the treatment journey much more difficult for him/her.
- Take time to talk with your AYA about how the cancer experience impacts his/her future: education, fertility, healthcare, etc.
Take time to:
- Help him/her decide how educational goals can be achieved during/after treatment;
- Make plans for fertility preservation;
- Discuss the impact to previous friendships and the possible need to find new friends that are more compassionate regarding cancer treatment and survivorship;
- Talk about how healthcare insurance/coverage works and will affect him/her in the future;
- Review the future health prognosis of your AYA, and the need for preventive maintenance healthcare, such as annual screenings;
- Discuss the transition to survivorship as a longer term journey; the AYA should not expect it to happen overnight, but rather over months or years, as their body and mind recover from treatment.
Sharing these important pieces of life knowledge, and outlining and discussing options, gives you an opportunity to empower him/her. These are also issues that may not be brought up by your AYA’s healthcare team, and may require initiative on your part to be discussed and addressed.
In summary, the goal of every parent should be to enable their child to grow up to be an independent member of society. Cancer throws a wrench in this process, and often forces AYAs to be dependent on parents and caregivers. As a parent, try to resist the natural responses of doing everything for your AYA. Check in frequently to help enable the AYA to own as much of the care process as possible, so upon survival, the final transition will be easier and more natural. Communication can make it possible to work through the various transitions.
Clarissa Schilstra is a two-time cancer survivor. She was diagnosed with acute lymphoblastic leukemia for the first time when she was two and a half years old. She went through two and a half years of chemotherapy and survived. She led a happy and healthy life until June of 2007, shortly before her 13th birthday, when her cancer relapsed. She then went through another two and a half years of chemotherapy, this time accompanied by radiation. She is now twenty-three years old and a graduate of Duke University. Her passion is helping others cope with the ups and downs of life during and after cancer treatment. She currently works full-time as a research assistant, in the Duke University School of Medicine Department of Psychiatry and Behavioral Sciences, with a team that focuses on developing interventions to help adolescents and young adults with chronic conditions transition from pediatric to adult healthcare. In the future, it is her goal to become a pediatric clinical psychologist and she would like to help improve the psychological care available to adolescents and young adults who have serious illnesses. As a CKN Section Editor, Clarissa hopes to provide advice based on her personal experience and to share relevant news and research to help young adult patients and survivors find new ways to live their best life in spite of the shadow of cancer. You can find Clarissa’s book, Riding the Cancer Coaster: Survival Guide for Teens and Young Adults, on Amazon.com. To learn more about Clarissa and her book, or to find AYA cancer support resources, visit her website and blog at www.teen-cancer.com.